'More extraordinary than mundane ' A phenomenological analysis of the experiences of individuals living with CLE and their taking care in the sun.

INTRODUCTION: CLE is a chronic inflammatory autoimmune condition of which photosensitivity is a major symptom. Individuals living with CLE are advised to practice photoprotection. Despite the benefits for disease control, many individuals living with CLE do not practice optimal photoprotection. The aim of this study was to gain a deep insight into the lived experiences of individuals with CLE and their photoprotective practices. METHODS: A qualitative study approach was conducted, using Hermeneutic phenomenology. Individuals living with CLE were recruited and interviewed. Rich pictures were used to enrich the interviews. Interviews were transcribed and analysed using Template Analysis. RESULTS: Analysis revealed four themes: 'Much more than just a photosensitive skin condition', 'The impact of sun on CLE and social dynamics', 'Drifting to the sun: personal transitions and social norms' and 'Taking care in the sun: easier said than done'. DISCUSSION AND CONCLUSION: This study provides a nuanced insight into the lived experiences of individuals with CLE and their photoprotective practices. Taking care in the sun is not a simplistic process. Beyond the biomedical model of illness, the social impact that CLE has on individuals has a dominant influence on their photoprotective behaviours. Such insights could help healthcare professionals tailor photoprotective advice.

The behavior, attitude, and knowledge towards photoprotection in patients with cutaneous/systemic lupus erythematosus: a comparative study with 526 patients and healthy controls.

OBJECTIVE: To evaluate the attitude, knowledge, and behavior towards the sun protection in systemic lupus erythematosus (SLE) patients with and without cutaneous involvement (CLE) compared to non-photosensitive controls and to determine influential factors for photoprotective practices in SLE patients. METHODS: A case-control study was performed. Patients and controls completed a self-reported questionnaire. For SLE patients, the presence of organ involvement, disease activity and laboratory data were acquired from their physical examination and medical records. RESULTS: A total of 263 SLE patients and 263 healthy controls were recruited. SLE patients had statistically significant better photoprotective practices than controls, i.e. exposure to sunlight <1 hour per day (76.1% vs. 48.3%, OR, 3.40; 95% CI, 2.34-4.93, p < 0.001), less outdoor activities (9.8% vs. 19.1%, OR, 0.44; 95% CI, 0.26-0.71, p = 0.003), wore long-sleeved shirts (57.0% vs. 32.7%, OR, 2.73; 95% CI, 1.92-3.89, p < 0.001) and hats (43.8% vs. 26.6%, OR 2.14; 95% CI, 1.49-3.09, p < 0.001). SLE with CLE subgroup had the highest percentage for regular practice in almost all sun protective means compared to SLE without CLE and controls. SLE with CLE patients had more diligent sunscreen application with higher percentage of consistent use (93.7% vs. 59.3%, OR, 11.66; 95% CI, 2.57-52.89, p = 0.001) and adequate application (58.1% vs. 24.6%, OR, 4.24; 95% CI, 1.93-9.30, p < 0.001) compared to those without CLE. Previous and current CLE were influential factors for adherence to photoprotective methods, while the extracutaneous involvement was not. The majority of SLE patients were well acquainted with the harm of sunlight to their diseases (91.6%). However, 40.1% of them did not perceive that sunlight could escalate their internal flare, which may have led to inferior photoprotective practices in patients with extracutaneous involvement. CONCLUSION: SLE patients had good awareness and practiced better photoprotection than controls. The cutaneous sign is a predictor for superior photoprotective behavior. Education regarding the harms of sunlight and the importance of appropriate photoprotection should be emphasized, especially in SLE cases without cutaneous involvement.

Response to Omalizumab in Solar Urticaria: Report of 3 Cases. / Respuesta a omalizumab en 3 casos de urticaria solar.

We report 3 cases of solar urticaria in which there was no response or limited response to first-line treatments with high-dose H1 antihistamines or phototherapy. The patients were then treated with omalizumab. Symptoms improved in 2 patients, whose tolerance to sunlight increased considerably; quality of life clearly improved for 1 of these patients. The third experienced no improvement and developed a mild local reaction to the injected medication. We conclude that omalizumab may offer a potentially safe, useful alternative for patients with solar urticaria who do not respond to conventional therapy.

Factors associated with sun protection compliance: results from a nationwide cross-sectional evaluation of 2215 patients from a dermatological consultation.

BACKGROUND: Campaigns designed to promote sun protection often fail to induce long-term changes in behaviour. There is limited information on patients with low compliance to sun protection recommendations from dermatologists. OBJECTIVES: To characterize dermatology patients at higher risk of low compliance to sun protection measures, and to investigate the relationship between sun protection behaviour, knowledge about accurate sun protection recommendations, ultraviolet (UV)-associated risks and level of UV exposure. METHODS: An anonymous self-administered multiple-choice questionnaire was distributed by dermatologists to patients receiving a sunscreen prescription. Four domains were explored: sun protection behaviour, sun protection knowledge, level of UV exposure and knowledge about UV-associated risks. We modelled sun protection behaviour and determined factors associated with low compliance to sun protection measures. RESULTS: In total 2215 questionnaires were analysed. Patients stratified by risk who better complied with sun protection measures had a better knowledge of UV-associated risks (mean score 14·45 ± 3·20 vs. 12·75 ± 3·29 and 11·20 ± 3·80, P < 0·0001) and sun protection measures (mean score 12·08 ± 2·79 vs. 10·68 ± 3·11 and 9·00 ± 3·63, P < 0·0001). Patients who better complied with sun protection measures also reported higher levels of sun exposure (mean score 4·24 ± 2·26 vs. 4·02 ± 2·05 and 3·34 ± 2·14, P < 0·0001). Factors associated with low adherence to sun protection behaviour were age below 20 or over 64 years, male sex, lower knowledge about accurate sun protection recommendations and UV-associated risks, and low UV exposure. CONCLUSIONS: This study shows the complex relationship between UV exposure, knowledge about UV-associated risks, and knowledge about sun protection recommendations and behaviour. Future skin cancer prevention programmes should focus on specific populations with low sun protection behaviour and high UV exposure.

Evaluation of the quality of life of lupus erythematosus patients with cutaneous lesions in Japan.

The quality of life (QOL) of lupus erythematosus (LE) patients with skin manifestations is impaired, but little is known about Japanese patients. We assessed whether the skin symptoms in LE are associated with the QOL using the Japanese versions of the Skindex-29 and Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI). In all, 54 LE patients with cutaneous lesions completed the Japanese version of the Skindex-29, and physicians assessed the severity of their eruptions using the CLASI before and after treatment. The QOL of the LE patients was better after the therapeutic intervention using the Skindex-29 questionnaire. We tested several factors for an independent association with the QOL. A significant risk factor for a poor QOL was a female gender in "Functioning" before treatment. In addition, a poor QOL tended to be correlated with a female gender in "Emotions" and older current age in "Symptoms" before treatment, and with a longer duration of SLE in "Functioning" after treatment. In the CLASI analysis, skin manifestation activity in the acute phase correlated with a poor emotional and functional QOL rather than a symptomatic QOL. To the best of our knowledge, this is the first report evaluating the QOL of Japanese LE patients, despite the small cohort.

Photodermatoses: environmentally induced conditions with high psychological impact.

Photodermatoses are a group of skin disorders caused or exacerbated by ultraviolet and/or visible radiation, which collectively affect a high proportion of the population and substantially affect quality of life (QoL). Our objective was to assess the psychological impact of these conditions. Patients with a range of photodermatoses diagnosed at a specialist investigation centre in the UK completed questionnaires evaluating (i) anxiety and (ii) depression, using the Hospital Anxiety and Depression Scale (HADS), (iii) social anxiety, using the Fear of Negative Evaluation measure (FNE), (iv) coping strategies (brief COPE) and (v) QoL, using the Dermatology Life Quality Index (DLQI). Questionnaires were returned by 185 of 260 patients (71.1% response rate). Mean age was 50.2 years (SD 14.5, range 20-85), 80.3% female. Polymorphic light eruption was the most common diagnosis, followed by photoaggravated eczema, other photoaggravated dermatological conditions and solar urticaria. Across the sample, high percentages, i.e. 23% and 7.9% of individuals, showed scores indicating clinical levels of anxiety and depression, respectively. Facial involvement was a strong indicator for depression (t = 2.7, p < 0.01). In regression analyses psychological factors (particularly depression and adaptive coping) were the principle predictors of QoL, accounting for 17.7% of the variance (F = 7.61, p < 0.01), while clinical variables accounted for an additional 10.1% (F = 8.96, p < 0.01), with number of months/year affected exerting a significant effect (p < 0.01). This study demonstrates the high psychological comorbidity of these conditions; more awareness of this is required, with adoption of a biopsychosocial approach to their management.

Autoimmune rheumatic disease associated symptoms in fibromyalgia patients and their influence on anxiety, depression and somatisation: a comparative study.

OBJECTIVES: In this study we evaluated the frequency of autoimmune rheumatic disease associated major symptoms in fibromyalgia (FM) patients, and the association between their presence and anxiety, depression and somatisation. METHODS: Two hundred and thirty-two FM, 78 systemic lupus erythematosus (SLE) patients and 70 healthy controls were included. All subjects were questioned face-to-face for the presence of autoimmune rheumatic disease-associated symptoms and antinuclear antibody (ANA) was determined. All FM patients were questioned for the severity of pain and symptoms of FM by using a visual analogue scale. In addition, all subjects were interrogated for anxiety, depression, somatic symptoms and neuropathic pain by using different validated questionnaires. RESULTS: FM patients had significantly higher frequency of photosensitivity (27.6% vs. 11.4%) and Raynaud phenomenon (22% vs. 10%) when compared to controls (p-values, 0.005 and 0.026). FM patients had significantly lower frequencies of photosensitivity, oral ulcers, xerostomia, and xerophthalmia than SLE patients (all p-values <0.001). ANA positivity was 11.8% in FM patients and 7.1% in healthy controls. ANA-positive and negative FM patients had similar frequencies of autoimmune rheumatic disease symptoms. FM patients with photosensitivity had higher anxiety (p=0.002), somatic symptoms (p=0.015) and neuropathic pain (p=0.03) scores than others. FM patients with Raynaud had higher anxiety (p=0.004), depression (p=0.001), somatic symptom (p<0.001) and neuropathic pain scores than others. CONCLUSIONS: The presence of which findings in FM seems to be associated with anxiety, depression, and somatization rather than ANA positivity and disease severity.

Impact of photosensitivity disorders on the life quality of children.

BACKGROUND/PURPOSE: Abnormal cutaneous sensitivity to the ultraviolet and/or visible radiation in sunlight characterizes photosensitivity disorders. Little is known regarding their impact in childhood. Our objective was to characterize childhood photosensitivity disorders presenting to a photoinvestigation unit, evaluating their impact on quality of life (QoL). METHODS: Photoinvestigation records of children attending from 2000 to 2007 were evaluated for diagnosis, clinical, demographic and phototest parameters. These children were subsequently contacted during summertime to evaluate the impact of photosensitivity on QoL, utilizing the children's dermatology life quality index (CDLQI). RESULTS: 83 children underwent photoinvestigation; 62 (74.7%) were diagnosed photosensitive (mean age 8.6 years, range 2-16; 33 female), with abnormal phototest findings in 35 children. 38/55 questionnaires (69.1%) were returned. Mean (± standard deviation) CDLQI score (all diagnoses) was 10.2 ± 7.3 with very high scores in xeroderma pigmentosum (20.7 ± 5.7; n = 3) and actinic prurigo (18.2 ± 7.1; n = 6) and moderate scores in photoaggravated eczema (7.9 ± 4.2; n = 8) and polymorphic light eruption (6.2 ± 4.4 n = 18). CDLQI correlated with number of months affected per year (r = 0.595, P = 0.001). CONCLUSION: Photosensitivity disorders have a substantial impact, ranging from moderate to extremely large, on QoL in childhood, and the psychological consequences should be considered in their management.

The quality of life of 790 patients with photodermatoses.

BACKGROUND: Polymorphic light eruption and erythropoietic protoporphyria (EPP) have been demonstrated to have a moderate and large impact on the quality of life (QoL) of patients, respectively. However, there is little information available about the impact of other photodermatoses on QoL. OBJECTIVES: To assess and compare the impact of all forms of photodermatoses on patients' QoL using the standard 1-week Dermatology Life Quality Index (DLQI) questionnaire and a modified questionnaire to assess the impact over the previous year. METHODS: All patients with photodermatoses seen between 2001 and 2005 at five U.K. photobiology centres were contacted by post on the same day during a forecasted sunny week across the U.K. and asked to complete DLQI questionnaires. RESULTS: A total of 1877 patients were contacted. Seven hundred and ninety-seven (42%) patients replied, with a range from 30% to 48% for the five individual centres. Nearly two-thirds of patients with actinic prurigo (AP) and more than one-third of patients with photoaggravated dermatoses (PAD), chronic actinic dermatitis, EPP and solar urticaria had a DLQI of > 10, confirming a very large effect of the disorders on QoL. Of the cutaneous porphyrias, both variegate porphyria (median DLQI 3) and porphyria cutanea tarda (median DLQI 1.5) had a much lower impact on QoL than EPP. CONCLUSION: This is the first large-scale study to attempt to measure the impact of a range of photodermatoses on QoL. Photodermatoses have a major impact on QoL. This impact is highest in AP and PAD.

Evidence of high levels of anxiety and depression in polymorphic light eruption and their association with clinical and demographic variables.

BACKGROUND: Polymorphic light eruption (PLE) is a prevalent photosensitivity condition associated with psychological distress. Objective To examine patients with PLE for evidence of anxiety and depression, the influence of demographic and clinical variables, and the coping strategies used. METHODS: In a cross-sectional design, patients with PLE (n = 145) who had attended a hospital dermatology department completed validated questionnaires assessing anxiety, depression, social anxiety, and coping strategies. Clinical variables examined were: (i) number of months of the year affected by PLE; (ii) facial involvement; (iii) time taken for the rash to resolve; and (iv) whether the patient ever used steroids for their condition. RESULTS: Participants ranged in age from 16-78 (mean 44 years, SD 11.9), 81% female, with a mean age at onset of PLE of 28 years. Evidence of high levels of anxiety and depression was found in PLE, with 22% and 8% of patients scoring as probable cases for anxiety and depression, respectively. Higher levels of anxiety were associated with younger age of onset of PLE (r = -0.25, P < 0.01) and facial involvement (t = 2.84, P < 0.01), and depression was also associated with facial involvement (t = 3.60, P < 0.01). Furthermore, higher levels of depression and anxiety were associated with the use of maladaptive coping strategies, and depression was found to be the principal predictor of quality of life. CONCLUSIONS: High levels of anxiety and depression occur in PLE. Clinicians should be alert to the potential need for psychological management, particularly in patients with facial involvement and a younger age of onset of PLE.

Psychologic distress in polymorphous light eruption and its relationship to patients' beliefs about their condition.

BACKGROUND: Skin disease can cause psychologic difficulties, but information is lacking on the emotional impact of the common photosensitivity condition, polymorphous light eruption (PMLE). OBJECTIVE: We sought to examine the emotional impact of PMLE, and its relationships with patients' beliefs about their PMLE and health-related variables. METHODS: Patients with PMLE who had attended a hospital dermatology department were mailed the Illness Perception Questionnaire-Revised during the summers of 2002 to 2004. RESULTS: Questionnaires were returned by 150 of 302 patients. Emotional distress attributable to PMLE was found in more than 40% of individuals. The emotional impact of PMLE was principally predicted by patients' beliefs about their condition (>50% of the variance), particularly regarding its consequences, whereas health-related variables played a lesser role. Women associated more severe consequences with their PMLE (z = -2.27, P = .02) and were more emotionally distressed (z = -2.17, P = .03) than men. LIMITATIONS: Hospital-based patients with PMLE may not be representative of the community. CONCLUSIONS: Psychologic factors should receive greater attention in PMLE management.

Quality of life and satisfaction with life in SLE patients-the importance of clinical manifestations.

To assess the correlation between quality of life (QoL) and satisfaction with life (SL) in SLE patients and correlate both with clinical symptoms of the disease. The study was performed in 83 patients. QoL was assessed by Short Form 36, and SL was assessed by the Satisfaction with Life Scale. Clinical manifestations presented at the time of examination were taken into consideration. SLE patients assessed their QoL and SL as rather low. Those with photosensitivity as well as neurological symptoms presented lower QoL in particular domains, while those with renal manifestation of SLE assessed their QoL as higher. Similar observations were made for SL only in relation to neurological symptoms. Moreover, our findings show that although SL is a part of QoL, both these parameters should be distinguished in order to fully assess the state of the patient.

[Dermatitis artefacta presenting as photodermatosis]. / Dermatitis artefacta unter dem Bild einer Lichtdermatose.

Dermatitis artefacta is a form of a self-injury due to psychiatric disorders or internal conflicts. Delayed diagnosis often leads to unnecessary treatments. A 17-year old girl was referred with a putative photodermatosis presenting with erosions on an erythematous base on the face and forearms. The unusual rapid onset of new lesions following phototesting and in particular a reaction induced after a simulated light exposure substantiated the diagnosis of dermatitis artefacta. Faced with the diagnosed the patient admitted she had induced the lesions and was referred for psychiatric care.

[Erythropoietic protoporphyria: coping with the disease from the biopsychosocial viewpoint]. / Erythropoetische Protoporhyrie: Krankheitsbewältigung aus biopsychosozialer Sicht.

Twelve patients suffering from erythropoietic protoporphyria (EPP) were interviewed about the biopsychosocial aspects of their disease. Painful cutaneous symptoms, anxiety and social stigmatization weight the patients down. Nevertheless, most suffers of this disease do not use all of the resources medical care could provide. Their strategies for coping with this chronic disease include unconscious defense mechanisms and a coping behavior that is largely conscious. The coping strategies are illustrated by a model. A plea is made for a holistic, biopsychosocial treatment plan for these sufferers.

A prospective longitudinal study of the outdoor behaviour and symptoms of photosensitive patients.

The purpose of this study was to determine the measures that photosensitive patients use to control their sun exposure. Each week from March until September 1995, 30 patients with polymorphic light eruption (PLE) and 17 patients with chronic actinic dermatitis (CAD) returned a set of reply paid postcards on which they recorded information about their outdoor behaviour and symptoms. The principal differences between the two groups were that CAD patients had a much greater incidence of symptoms despite making more use of protective measures such as covering arms, wearing hats and applying sunscreen, than patients with PLE. And that as summer approached the PLE patients spent more time outdoors, whereas there was less seasonal variation in this respect among CAD patients. Tentative conclusions drawn from mathematical modelling indicated that the incidence of rash on a particular day was influenced by ambient ultraviolet radiation and length of time spent outdoors. There were indications that wearing a hat and keeping the arms covered offered some protection, whereas use of sunscreen may actually increase the likelihood of symptoms.

[Solar urticaria]. / Lichturtikaria.

Solar urticaria serves as a model to illustrate the photodiagnostic approach in rare photodermatoses and to demonstrate how patients can be effectively helped by prophylactic and therapeutic intervention. To accomplish these tasks, advanced knowledge and experience in photodermatology is required, along with equipment which is often available in specialized centers only. A list is attached listing the dermatology departments with photodiagnostic units in Germany, Austria, and Switzerland.